Health · access · real life
Seven diagnoses. One whole me.
These are the names doctors use for seven parts of my health. I explain the facts, then the less tidy part: what each diagnosis changes at school, at work, at home and inside an ordinary day.
Public, but not unguarded
I've chosen to name these diagnoses publicly because they affect access and how people understand me. My medication, appointments and other treatment details stay private.
01, 07
Choose a diagnosis
Each page has the medical definition, my version of living with it, the things that help and the questions people usually ask. The treatment details remain mine.
Communication · sensory access · boundaries
How to communicate with me.
I write, type, sign and use a speech-generating tablet. Give me time, speak to me directly and ask before making decisions about my body or access.
Word choice, , . Read the full glossary
The useful five
More detail
Choose the section that matches the situation: conversation, sensory access, health, boundaries or planning.
Conversation and the speech tablet
Typing is communication, not a delay before communication.I usually write or type. In public, a speech-generating tablet reads my completed words aloud. The recorded voice was donated by a boy who later became my friend.
Ask one clear question at a time. Leave the pause open. Keep eye contact natural rather than staring at the screen. If the device is charging or unavailable, paper, phone, gestures and signs still exist.
Do not ask a companion to answer a question directed to me unless I have clearly handed it over.
Sensory access and panic
Quiet and predictability help more than encouragement speeches.Sudden noise, bright light, crowds, touch and unexpected changes can overload me. Tell me the plan clearly, flag changes early and make a genuinely quiet retreat possible. I hear spoken information perfectly well.
During panic I may lose typing, signing and clear movement at the same time. Repeating questions or putting the tablet into my trembling hands can make things worse.
Reduce sound and people, step back, protect physical safety, involve a trusted adult and allow recovery without demanding an explanation on the spot.
Medical context that changes access
The diagnoses matter only where they change safety or participation.Bilateral vocal-fold agenesis means the sound-producing tissue is absent. Partial epiglottopexy, cricopharyngeal myotomy, laryngeal suspension and aryepiglottic-fold plication made swallowing and aspiration much less troublesome. My cough remains weak, so respiratory illness and emergencies still need adult planning and daily airway-clearance support continues.
I have acquired partial hypopituitarism, including growth hormone and gonadotropin deficiencies. These affect my growth and development. Speak to my real age: fourteen.
Non-24-hour sleep–wake disorder gives me a roughly 27-hour internal day. My energy and availability may shift; this is not laziness or bad planning. Treatment details remain private unless I choose otherwise.
Touch, photographs and boundaries
Consent is specific and can change with context.Ask before touch, including styling adjustments. A yes to one person or one moment is not permanent permission.
Explain where an image will appear before taking or publishing it. Do not turn my distress, medical care or private communication into content.
Use the name appropriate to the context. Do not invent nicknames. Do not force eye contact, speech attempts, hugs, handshakes or personal disclosure.
Work, school and events
Build access into the plan instead of improvising around me.Make schedules and call sheets available like you would for the rest of the team. Spoken questions and direction are fine. Add time for me to type my answers, and keep one named adult responsible for access changes.
For modelling, a parent, agent or manager handles professional contact. Measurements and casting information belong in that context, not casual public commentary.
Emergency plans must not depend on shouting. Agree on visual check-ins, who notices me and how I can summon help.
Respect still comes first
It is not permission to diagnose, infantilise, test, rescue or speak over me. Good access is not a favour; it is how I actually get to participate.
Read the full storyPlanning something with me?
Send the format, timing, location, sensory conditions, contact person and what decisions need an answer. A parent, agent or manager can then prepare access without guessing.
Contact the teamThese pages describe my own diagnosed conditions and my own experience of them. They're not medical advice, and they don't describe everyone with the same diagnosis.